Overview

Children’s Programs

In light of the unprecedented fiscal crisis confronting the state, as well as the almost universal understanding that better coordination of care will lead to better health outcomes for enrollees (and taxpayers), the Medicaid reform law Public Act 96-1501 was passed nearly unanimously. As required in the Medicaid reform law, the department along with the Department of Human Services, other partners and stakeholders will explore how income limits, and income counting methods, established for children under the Covering ALL KIDS Health Insurance Act should apply to medical assistance programs available to children made eligible under the Illinois Public Aid Code. This will include children made, eligible for home and community-based services (HCBS) waiver programs, authorized under Section 1915(c) of the Social Security Act, where parental income is not considered in determining a child’s eligibility for Medical Assistance. Currently, three HCBS waivers do not consider parental income: 1) Waiver for Medically Fragile Technology Dependent (MFTD) Children; 2) Support Waiver for Children and Young Adults with Developmental Disabilities, and; 3) Residential Waiver for Children with Developmental Disabilities.

Initial Review of States with MFTD HCBS Waiver Programs

Literature and Internet searches have been initiated on nine states that serve MFTD children through HCBS waivers including; California, Hawaii, Iowa, Maryland, Minnesota, Oregon, Pennsylvania, Vermont and Wisconsin. This review focused on eligibility, entities that conduct the eligibility and service approvals, utilization of skilled and unskilled care and parental fees.

States have flexibility in the design of HCBS waivers, evidenced by how each state operates the programs differently. Three states had eligibility systems that were either automated (Wisconsin), numerically assessed (Oregon), or had defined upper limits (Iowa). All states, but Minnesota and Wisconsin, have either a cap on nursing hours, or a cap on dollar expenditures.

Most states provide nursing services through the regular state plan, or as an Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) service. EPSDT is Medicaid's statutorily required comprehensive and preventive child health program for individuals under the age of 21. Today, EPSDT is the most comprehensive child health program in either the public or private sector. EPSDT requires states to provide Medicaid-eligible children with periodic screening, vision, dental, and hearing services. It also requires states to provide any medically necessary healthcare that falls within the scope of services listed at Section 1905(a) of the Social Security Act to a child, even if the service is not available under the state's Medicaid plan to adults.

Eligibility is assessed by Quality Improvement Organizations (QIO) in three states, county agencies in three, state staff in two, and non-profit agency in one state. Budgets are set by state staff in five states, counties in three and managed care in one. Five states utilize consumer direction (CD), four of which are approved in the state’s waiver. Six states use personal care assistants (PAs). The use of PAs was not directly linked to CD, as one of the states allowing for CD did not allow PAs and one with no CD did allow use of PAs. Five of the states utilize Registered Nurses more as supervisory and less for direct care. Several of the states appear to have more liberal nurse practice acts that have a consumer direction approach and promote a blend of unlicensed and licensed care. Minnesota and Wisconsin charge parental fees for services provided to minor children receiving long-term care supports. In both states, fees are assigned based on standards or fee scales adopted through the states’ legislatures. The following summaries provide a brief overview of Illinois and each state reviewed:

California is a county-based state. County entities authorize services and provide care coordination. Like Illinois, nursing is provided as a medically necessary service under EPSDT, rather than through the wavier or state plan. Physicians determine the delegation of care to be performed by Certified Nursing Assistants (CNAs), Licensed Practical Nurses (LPNs) and Registered Nurses (RNs).

Hawaii recently converted the 1915c) MFTD HCBS waiver to an 1115 Demonstration. Under this effort, Hawaii offers two managed care programs, one that serves the traditional Medicaid program and the second that serves individuals with disabilities, including children formerly under the MFTD waiver. Each child has a service coordinator who is an employee of the health plan. The service coordinator conducts the eligibility assessments and the state’s Quality Improvement Organization (QIO) makes the actual eligibility determination and plan approval. Nursing is provided as a medically necessary service under EPSDT.

Illinois uses the state’s Title V agency, the Division of Specialized Care for Children (DSCC), at the University of Illinois, to conduct the Level of Care (LOC) screenings to determine medical eligibility and to collect supporting medical documentation. State staff set the budget and DSCC provides case management for the program. The LOC tool is similar to the one used by Oregon and also requires a minimum of 50 points for medical eligibility. Although Illinois has an objective, standardized LOC screening tool, it is not fully automated. Illinois has not implemented consumer direction in the MFTD waiver.

Illinois does not have a cap on the number of nursing hours. With an institutional alternative federally required to show the cost benefit (or at least neutrality) of the waiver services, the medical service limits for most children under the MFTD waiver are compared to pediatric hospitals — or up to approximately $55,000 per month in the Chicago area. It is not an entitlement for the participant to receive that level of services. Nursing is provided as an EPSDT service. Illinois uses almost exclusively RNs and LPNs for nursing services under the waiver. Illinois appears to be one of the most generous states in providing nursing services to children in the MFTD waiver.

Iowa uses an interdisciplinary team process to determine Level of Care (LOC) through the state’s QIO, and state staff determine budgets. The maximum thresholds that may be authorized are up to $904/month for individuals meeting a nursing facility LOC, up to $2,631/month for individuals meeting a skilled nursing facility LOC, and up to $3,203/month for individuals meeting an ICF/MR LOC. The waiver includes a wide range of supports, including consumer directed personal attendant services and additional case management for children needing 12 hours or more of supervision per day. Nursing is provided as an EPSDT service, as a waiver service and as a state plan service.

Maryland operates a model waiver limited to serving 200 individuals. Children are compared to hospital LOC, because Maryland does not have pediatric nursing facilities. The state’s QIO conducts the eligibility assessment, and state staff set the budget. Maryland hires a nonprofit agency to conduct case management. A state RN meets weekly, with the case management agency, to review participants. Nursing is provided as a medically necessary service under EPSDT, as a waiver service and as a state plan service.

Minnesota, another county-based state, utilizes county agencies to conduct eligibility and set budgets. Minnesota is in the process of adopting a new universal comprehensive assessment system to all long-term care services, including waivers, institutional care and state programs. The state allocates an aggregate budget to the counties, and counties authorize services within the global budget and provide care coordination. The service package is quite broad, and includes consumer directed services that allow consumers considerable flexibility, either to choose traditional services, or to purchase alternatives to traditional services or a combination of both. Minnesota assigns parental payment fee schedules based on parental income. Many nursing functions can be delegated to individuals, who are not nurses, through specific requirements that outline training and oversight. Minnesota allows payment to parents of minors for up to forty hours per week for personal support services which could be a step toward less dependence on skilled nursing. Minnesota was the first state to obtain this authority under its 1915c) waivers. Nursing is provided as a state plan service, with additional hours provided through the waiver.

Oregon uses state employed nurses to determine eligibility and budgets. Oregon links level of services via a tool similar to Illinois’ LOC tool, using a numeric scale to identify the medical technology needs of the child. A minimum score of 50 is required for waiver eligibility. These levels are also used to serve Medicaid eligible children under EPSDT, who are not eligible for the waiver. Oregon was the only state found to use a numeric system, and other clinical criteria, in determining the monthly service budgets. These were broken down into six service cost maximum levels of care defined by rule. Level I is the highest and Level VI is the lowest. For example, Level I (up to $19,800/month) requires the individual to be ventilator-dependent, 24 hours a day, for the maximum budget; have a score on the clinical criteria of 75 or greater, and require continuous observation. On the lower end, children with scores under 50, who otherwise meet Title XIX (Medicaid) or Title XXI (SCHIP) services, have a medical need that is likely to last for more than two months and other defined criteria, may be eligible for Level VI (up to $4,950/month). Oregon protects its investments on home modifications by spreading out the costs that exceed $5,000, over an extended period, and placing liens on the home of the family for purchases over $5,000. Oregon has a strong consumer direction philosophy, and a liberal nurse practice act. When personal assistants are used, the family is the employer. Nursing is provided as a state plan service.

Pennsylvania operates a combination of fee for service and managed care component (in 20 counties). A state medical review team, including a nurse team, authorizes the scope and duration of medical care. Case management is performed by RNs employed by the state, however, there is one private vendor utilized. Some children receive personal care attendant services and home health aide services, both provided through home health agencies. Nursing is provided as a state plan service.

Vermont recently implemented a “universal waiver” that covers all programs under a global cap on expenditures. Eligibility and budgets are determined by designated state staff, and Home Health Agency RNs provide care coordination. Vermont expects that two unpaid caregivers provide up to 12 hours of care per day. Although there is some flexibility for more hours directly after discharge or transition to the waiver, the state does not provide 24-hour-care for individuals living in their own homes. Vermont reports a liberal nurse practice act, where most skilled care can be delegated by a nurse. Delegation is determined on a case-by-case basis, with nurses observing the performance of care at least once every thirty days, and very low case management ratios. There are a few consumers using consumer directed services. In these cases, the consumer is required to have a licensed RN review all delegated tasks. Nursing is provided as a state plan service.

Wisconsin has an automated functional screening process for all levels of care for waivers. Due to the complexity of the criteria collected in the assessment process, an automated system was implemented to determine the LOC. Like Minnesota, Wisconsin assigns parental payment fee schedules based on parental income. As a county-based state, the county takes the lead in service level approvals, setting budgets and case management. They also share financial risk and contribute additional local dollars as needed. Nursing is provided as a state plan service, with additional hours provided through the waiver.

Transition to Adulthood Highlights in Other States with MFTD HCBS Waivers

Each of the nine states was asked how they address transition of children to adult services. There was no impact in three states (Iowa, Minnesota, and Vermont) as they serve adults under their MFTD waivers. Iowa was unique, as legislation was passed to extend “EPSDT” level of nursing services to the MFTD group up to age 25. Staffs have reported that this has provided additional time for people to transition to adult level of services, but since the change was recent, the full impact of the transition at age 25 is unknown. The remaining states report varied issues in transitioning to adult level of services similar to those in Illinois.

Like Illinois, most states transition persons from the children’s waivers to disability, or developmental disability, waivers serving adults. Typically, services provided to adults are far less generous than what is available to children. Minnesota is working on a common service menu across all waivers, and a universal base assessment, that includes additional screens and referrals based on the individual’s needs. Transitioning to adult services is much less problematic in states providing nursing as a state plan service for both children and adults.

Outstanding issues for consideration

During the review of other states, several areas were identified for further exploration or potential implementation:

Use of an interdisciplinary team to determine Level of Care;

Use of an automated assessment/risk tool and process;

Development of a tiered system of service packages and budgets based on the service needs of the child resulting from initial assessment and periodic reassessment of service needs.

Budgets and service packages authorized and performed by an entity with some financial risk or investment in the outcome;

Use of consumer direction to achieve greater flexibility for clients, which may include family-directed personal assistants or supportive services such as chore and homemaker services to potentially free up time for unpaid caregivers;

Use of private duty nurses to provide direct care;

Use of a combination of skilled care, unskilled/consumer-directed care and uncompensated care, which may include the need for creating greater flexibility in the Nurse Practice Act and Acts regulating other relevant professionals to accomplish this combination of care;

Review of services available to children with complex health needs who may not currently be eligible for MFTD waiver and/or who are on waiting lists;

Review of services for children as they transition to adulthood; and

Parental cost-sharing for certain services.

Next Steps

A stakeholder work group, including physicians and other providers who specialize in serving children with severe disabilities, as well as advocates, will be formed to review and make recommendations with respect to the issues identified above. The department will assist the stakeholder work group in review of federal requirements, further research of how states assess, plan and implement service plans, and other options that Illinois may consider.

The intent of this group is to contribute to a full review of options and recognition of the needs of the children being served through the waiver and other similar programs.

As required by law, a report on the analysis of these activities will be presented in the Department’s Fiscal Year 2011 Annual Report due in April 2012.